Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Does It Feel To Be Cured Of Celiacs, When You Finally Get Your Life Back?
0

14 posts in this topic

Just curious of how it feels to get your life back after being sick and undiagonosed with Celiacs, long term? How does it feel to get healthy again?

0

Share this post


Link to post
Share on other sites


Ads by Google:

It feels great to feel "normal", of course.

 

I just want to address the title  as I don't want you to have any misconceptions.  Celiac is not "cured".  You have it for the rest of your life. You must eat gluten-free for the rest of your life.  You may feel "cured" but you can never stop treating your "illness". Unlike other chronic illnesses,  the treatment isn't dangerous.  The illness doesn't progress on the gluten-free diet.   :D

0

Share this post


Link to post
Share on other sites

I have to echo Karen's thoughts about the word "cure".

There are really no "complete cures" for autoimmune diseases, but there are treatments that put symptoms into

remission. We're lucky that it's the gluten free diet and not a medication or treatment that has horrible side effects

and we have an excellent chance of recovery provided we remain G F and address any deficiences, etc.

 

For me, it took a long time to feel good. But honestly, I was very ill at diagnosis,

so even though I have joint and connective tissue issues

as a result of going undiagnosed for so long, I am so much better

than I was,my brain works again,  I can do more (physically) than I could for a long time 

and I sleep through the night for the first time in my life. And I do not live in the bathroom anymore. (yaay!)

 

So, in a way, it feels like a whole new life. :)  whoohoo!

0

Share this post


Link to post
Share on other sites

as kareng and irishheart have already said no cure but  a forever treatment. I am good with that :)

I dont know if any one that knows me would call me normal in any way :P:lol: :lol:  but knowing that my hard work in adhering to a gluten free diet has  returned my gut to  "normal" ( well as normal as I will ever get :lol: :lol: ) is priceless :D

 

I ( as Irish) was undiagnosed for a very very long time, the damage from untreated long term celiacs can be tremendous ,, even life threatening ,,

The complications  of being undiagnosed,, there for untreated  ( additional intolerances ,gluten ataxia ,  additional autoimmune diseases ect ) is what I am  dealing with  long after my celiacs is under control.

0

Share this post


Link to post
Share on other sites

I don't feel cured either. I am not back to great health yet, and I honestly doubt I ever will be - too many permanent health problems were created by decades of a missed diagnosis. I may no longer have to carry an extra sweater to hide my bloat after I eat, but my thyroid still doesn't work, I still have an autoimmune blood disease, arthritis is still there (although much less), and a few other areas are still out of whack.

I feel better than I did, but far from cured.

0

Share this post


Link to post
Share on other sites




I feel so much better it is ridiculous.  I am carrying some damages though and still gathering inventory about it.  There wasn't a day that I said, "Oh, now I am better!"  There were many days I did feel that way.  It feels good to have a clear mind and energy.

 

D

0

Share this post


Link to post
Share on other sites

  There wasn't a day that I said, "Oh, now I am better!"  There were many days I did feel that way. .

 

D

yeap :)

 

it is not 'one day you feel like crap and the next day you are normal again never to be ill again'

 

it is  slow process ,after awhile you realize you are having more good days then bad, ,,,that you feel so good that a bad day can blind side you but good days come again , & again & again :wub:

0

Share this post


Link to post
Share on other sites

Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!

0

Share this post


Link to post
Share on other sites

Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!

 

Yes, removing gluten allows your small intestine to heal which allows your body to absorb all the nutrients needed to improve symptoms present throughout the body...not just the digestive system :)

 

Added bonus....many that remove gluten have marked improvement in symptoms of ALL autoimmune disorders - RA and Fibro included.

1

Share this post


Link to post
Share on other sites

....and some discover they never even had "fibro" or thyroid disease or clinical depression or

incurable insomnia, or ..., or...(fill in the blank)  .....at all....celiac is the great mimic.

 

See how your body heals and be patient. My motto:  "every day is a healing day".

Edited by IrishHeart
1

Share this post


Link to post
Share on other sites

yep, what she said :D

0

Share this post


Link to post
Share on other sites

It feels wonderful to not be in pain every day. I do still have a lot of damage that came about because of the long time it took for me to be diagnosed and it did take years to get to the point where I could live a semi-normal life. However it also makes me a bit sad when I think of all I missed out on with raising my children. My poor kids grew up with a mother who was slowly dieing in front of them. One of them as a teen even told me the family would understand if I committed suicide. No child should have to go through that. It also makes me sad that they never got to know the 'real' me as I wasn't diagnosed until they were almost fully grown.

Thankfully doctors are getting a bit more savvy about diagnosing us so hopefully there are fewer and fewer people living with having to watch a loved one suffer so greatly.

0

Share this post


Link to post
Share on other sites

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;) 

1

Share this post


Link to post
Share on other sites

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;)

 

That's exactly how I feel.  I was asymptomatic when I was diagnosed but since being gluten free my mood is better, I sleep better, and I can get in a really really good work out and come out feeling strong instead of beat-up.  For not knowing anything was wrong with me before the difference is pretty amazing.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,678
    • Total Posts
      921,703
  • Topics

  • Posts

    • At the moment it's microwave rice packets as it needs to be something easy for lunch at work. What do you choose for breakfast? At the moment I have gluten-free porridge oats with fruits but also seeing oats are a bit of a gamble in the early days. Trying to figure out how long a reaction takes to show up i.e. if I feel ropey later in the day is it really lunch as I'm blaming at present or actually is it something from the morning or even night before? The food is the toughest bit for me right now; wasn't that great with it before so will need plenty ideas from you good people... seems I'm in the right place though   
    • I know what you're going through - it's that grieving process and it's tough.  I was diagnosed in 2013, and aside from an occasional pity party, I don't look back. I have my restaurants where I feel safe, I have the food I know I can eat, and I get on with my life.  I'm lucky that I live in a big city with lots of options, but you can make this work, and you will feel better and once you do, you'll stop grieving.  The people on this site helped enormously. It is tough in the beginning to know if you've been 'glutened' vs. just going through withdrawal.  For that reason alone, it's best to avoid restaurants for a little while and be careful at home - just to be sure what's happening.  Eventually you'll be able to get back to your version of 'normal'.  Oh, I also have hypothyroid/hashimoto's.  No big deal, I take synthroid. Quinoa, eggs, nuts and beans for protein.  You don't have to go crazy on the cooking.  Just eat a lot of whole foods.  There are a lot of complicated recipes out there, but now may not be the time.  Rice noodles in veggie bouillon - easy and cheap.  gluten-free pasta with olive oil, parmesan and garlic - easy.  I eat a lot of rice and have never had a problem - you're not getting it out of one of those bulk bins, are you?  That could be contaminated.  Go with packaged.  Do you have access to the Macro Vegetarian brand of prepared rice dishes (in the refrigerated section).  They have several that are gluten free, they're delicious heated and with a little gluten-free soy sauce.  They're my go to on days I don't want to cook. Good luck!  
    • I also think that the HPV/Gardasil vaccine triggered something in my body. I had some Celiac symptoms many years before this vaccine but I felt ok. I was physically very active. However, after I received the third dose as well, I began having more problems including a more persistant pain, overall body weakness, lack of concentration, hair loss, etc.
    • OK so been to the doctor, they've sped up my referral and I should get the appointment booking form in the post shortly. They've said stay off the gluten until I have a date for the appointment then in the weeks leading up to it go back on - thoughts? Did my bit of sport last night which was a great relief to be free of any illness-related thoughts for an hour or two; didn't think I'd have the energy at the start but soon got going and was OK so that's a plus I seem to be getting some strange symptoms at the moment that have only happened since trying to remove gluten, do these sound familiar to anyone? dry forehead, just starting to go red \ itchy in places. Treating with E45-type cream tender scalp and sides of head, almost like a pulling feeling and a bit sensitive to touch. Scared this one matches the symptoms of GCA, a particularly nasty autoimmune disease that can lead to blindness 
      Edit: having said that just found this thread and funny enough did wash my hair this morning...
      http://www.celiac.com/gluten-free/topic/50920-sores-on-scalp/ one eye watering and associated fuzzy vision at times, trying to reassure myself it isn't blurred vision due to the point above sometimes bit of a lump in throat sensation, seems to come and go Been reading that some people can't handle rice - I was OK with it whilst eating gluten but have been having it for lunch each day and seem to get worse around 4-5pm so could that be a culprit? How long after coming off gluten would I be able to say I'm at a baseline to know if feeling ill is down to "glutening" vs. blaming it on the body adjusting to the change in (lack of) gluten in food?
    • First of all, welcome to the forum! it's good to have you here. Secondly, I can really relate to the fatigue portion.  it really hadn't affected me until everything hit the ceiling medically for me.  I was constantly tired all the time, and waking feeling rested in the morning. Prone to depression and anxiety, definitely.  It drove me nuts for those first few weeks.  That's when I decided to try going off the gluten to see what happened.  I still dealt with the depression, anxiety at crazy levels, and inability to focus/concentrate, but it had gotten progressively better.  The anxiety got so bad I would have panic attacks in public areas which only ramped up the anxiety because people saw what was happening.  I would encourage you and your doctor to do a full Celiac panel before you decide to try the gluten free diet.  I had my blood work done after I was off gluten for about two months or so.  Thankfully, my levels were still high to register at least a gluten sensitivity.  Since going off gluten for almost a year now, things have started to finally appear "normal".  Whatever normal means for me now.  As I am healing from the 30 years of glutenizing, I combined both natural methods with the medical methods.  If you are interested in the different avenues of natural methods, I would be willing to share with you.  I will be praying for you as you go through this journey. Let me assure you, you are not alone in this journey.  Depending on family dynamics, they can be a great source of support.  This forum is also a great place to bounce thoughts or concerns off of.  Good luck.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,675
    • Most Online
      3,093

    Newest Member
    JVerg11
    Joined